Neurosarcoidosis - Any personal stories?

RE: Neurosarcoidosis - Any personal stories?

My brother has this horible disease on the brain. And the way the doctors are talking there does not seem to be much hope. The steroids have not worked, imaxiflab now hes on something experimental to do with white blood cells but the doctors have said not to hold our breath.

RE: Neurosarcoidosis - Any personal stories?

Hi
I was given a diagnosis of neurosarcoid in December 2005. The way they found it with me was that I had persistent blood in my urine, which led to a renal scan which showed up nephrocalcinonis. My blood calcium levels were extremely high as were my vitamin d levels. I had various CT scans - chest, abdomen, lumbar puncture, bone marrow biopsy and an MRI of the brain. Basically, they were looking for tumours I think even though they said that they thought it was sarcoid because of the high vit d levels - apparently that gives it away. Anyway, the only thing they found was a lesion on my pituitary stalk, thickening of the meninges and basal cisterns and also 2 epidermoid tumours on the brainstem. I was given high dose IV steroids in hospital - all this whilst being 25 weeks pregnant - which incidentally led me to have an emergency casearean section at 32 weeks gestation.

On my last MRI of the brain in February this year, the thickening of the meninges had gone together with the thickening of the basal cisterns. This accordingly to my neurologist is very positive. I have a follow up appt. on 24th April.

I remain on 10 mg prednisolone daily and Ramipril for raised BP. I am 35 years old with 4 children. I too have strange sensations, the main one at the moment being a burning sensation of my tongue. My calcium levels are now in the high normal range (sometimes creeping outside this range unfortunately) and my renal function is about 50% of what it should be.

You say there is no hope? Why do the doctors say this? There is a great website call sarcinfo.com and marshallprotocol.com which is run by researchers in the States who have found that in bacteria that cause sarcoidosis responds to angiotensin receptor blockers and antibiotics. You just need to find a doctor who is willing to monitor you on this course of treatment - which I am trying to do at the moment.

This is apparently a very rare condition, so it is nice (so to speak) to find other affected by it and share experiences.

Anna.

RE: Neurosarcoidosis - Any personal stories?

Hi Anna,
the doctors have said there is no hope as it is very agressive the neurosarcoidosis he has. And he has not responded to any of the normal treatments. I have asked thedoctor looking after him about the marshall protocol and he said he might do it as long as it does not harm him but he said you should not believe everything from the net as it is usually not true. This got me thinking so i googled trevor marshalls name and found this site [link= http://www.trevormarshall.com ]www.trevormarshall.com[/link] and i have to say unless hes a genius, the things he has designed makes me worry if he knows anything about the subject. My only hope is to find somebody independently(and not via the sarc info site)who has actually had the marshall protocall and found it to work then i would be satisfied. My doctor has never heard of it and hes a speciallist.

RE: Neurosarcoidosis - Any personal stories?

Hi

I had a similar response from my doctor at the hospital that I shouldn't believe what I read on the internet and should basically stay away from it! However, there are testimonials from lots of people that say they are so much better after following this course of treatment.

What are your brothers symptoms if you don't mind me asking? Also, is the neurosarcoidosis a complication of sarcoid elsewhere in his body or is it in isolation? It is a really scary disease and I worry so much what the future will hold. Some web sites (and doctors) say it is a self-limiting condition of 2-5years but others talk about high mortality rates. I just don't know what to believe really. How old is your brother and when was he diagnosed?

Regards

Anna.

RE: Neurosarcoidosis - Any personal stories?

Hello!
I have recently started seeing a reflexology client who has been suffering with neurosarcoidosis for the last 10 years. Currently she is well (as well as she can be anyway); but has been living with the disease for the last 10 years (diagnosed for last 10 yrs). She has been from the brink of death and being paralysed from the neck down to working full time again and living a "normal" life. This woman is an inspiration - and she regularly gets invited by consultatants to talks about this disease as she almost knows more than them! She truely believes that treating herself with nutrition and massage/reflex etc has been her key to getting better. She says she's in a state of discomfort all the time, but this is nothing considering she is now off meds which she feels make her worse.

Anyway thought I'd share that with all of you who are suffering - just so you know that there are many means and ways to treat yourself and that even on your worst days, just remember there will be good days too 🙂

R x

RE: Neurosarcoidosis - Any personal stories?

Hi again,

My brothers syptoms are hiccups, twitching, no short term memory- he does not know if he has eaten any food ten minutes after eating, hulucinations, he makes up storys which are total untruths and if you didnt know he was ill you would think he was lying, he had lost his balance as well and now he is bed ridden, he cannot control his bladder. As far as i know its just on the brain the doctor says he gets a case like this say once every 3 years and none of those patient lived a proper life again. The shortest time to death was 3 months and the longest was 10 years. I dont want to make you feel worried as you probably have a less aggressive form of the disease. My brother is 35 he was diagnosed 2 years ago but was having syptoms a year before which all the doctors fobbed off.

RE: Neurosarcoidosis - Any personal stories?

Thank you for that calm and clear i might just contact you in the near future to find out more!

RE: Neurosarcoidosis - Any personal stories?

hi.i got the disease on father's day last year,was expecting sock's again,something i did'nt need for the next seven weeks.went to a&e around midnight,with a numbness in half my face and ma legs working ,not the way i wanted. a few test's and an xray and some baffled looks,then suddenly my world started spinning,which it done for the next three week's ,at first they thought it was a stroke,then shifted me to the stroke unit,then it got alot worse,the spinning continued,then my eyesight started to fade then my hearing got more acute,my speech was going.then was moved to another hospital,then more bits and bobs stopped working and the room was still spinning,had a load of test's done.then they started treating me with drugs,had a few days of hallucinations,then gradually over next few weeks,wee bits started to come back,had to learn to walk again,and eat and stuff ,was quite a few weeks before i could get up on my own,though i had tried many times in between,to no avail.
left hospital thinking i was alot better,but easy street was'nt as easy as i thought it would be,millions of different symptoms everyday,heat,numbness ,hearing changes,eyes,speech walking ,falling over thinking i'm walking. the list and permutations are endless,it's like christmas,you don't know what your getting.
i've had it for over a year now and could'nt say wether i'm getting any better or not,i think maybe i've just found ways of avoiding making it feel worse.
i can't listen to music anymore or go shopping or anywhere that's busy with people.i cant do any sort of work about the house,and my body seems to freeze up umpteen times a day.
most of the time it feels like i'm on a boat or stepping onto a boat. it's a pretty fascinating illness, i can think of worse ones to have,but if this one goes away as quick as it came,i don't think there will be much love lost.....but i have a feeling it's gonna be here for awhile.

RE: Neurosarcoidosis - Any personal stories?

Hiya,

Im sorry to tell you this but my brother died of the disease a few months ago im more than willing to answer any questions on the subject if i can. Have you also visited [link= http://www.sarcinfo.com ]www.sarcinfo.com[/link].
I went through alot of emotional pain with thesarcoids of my brotherand i feel that maybe he might of been here if we made better dicisions on the disease.Im more than willing to answer any questionsyou might have

RE: Neurosarcoidosis - Any personal stories?

Hi Daza85,

I'm really sorry to heard about the death of your brother. Unfortunately my Dad passed awaya fewmonths ago aswell.

RE: Neurosarcoidosis - Any personal stories?

Hello dasa85 & all members here,
I read yours & all these posts listed here, today 5th Oct. '06, for the first time, after doing a web search on Neurosarcoidosis.

I read your last post on this page with a tearful heavy heart & great sadness for you & myself on your brothers premature death. I truly hope your great sadness will soon pass to fond memories of the good times spent with your brother.

I also suffer with Neurosarcoidosis, but I'm feeling far too down right now after reading these posts to expand at the moment. I will come back later.

For the moment, my best wishes & love to you & Purplepixie.
Peps

Neurosarcoidosis

Hi every one im 18 and just found out i may have Neurosarcoidosisthat i may have had for 4 years or more but there is hope for every 1 out there n i get the results on the 1st of may so will keep u posted n let u no what they are plkanning to do and my deepest sympathy to those that have Neurosarcoidosis or have lost a loved one to it xx🙂

Neurosarcoidosis

My sympathies to those who are suffering with this disease and condolences yo those who have lost a loved one. To Lucinda Rose I say beware of the Marshall Protocol. He recommends the same treatment for Chronic Fatigue Syndrome and if you investigate his background he isn't a doctor, which is probably why doctors are sceptical about him. He started as an electrical engineer from Western Australia, who later moved into biochemistry.

Dear purplepixie
I was sorry to read about father,my wife has had neurosarcoidosis for nearly a year now.
She was doing well up to about three weeks ago then started getting the shakes and also gets very tired and goes to bed alot now. May i ask how long your father had his problem before he died.I am really worried about the future for my wife.Your input would be most welcomed. thank you.
Mr PA Condell

Hi all,

My sister has been diagnosed with neurosarcoidosis recently after months of tests.
She had sarcoid in her lungs which was diagnosed 3 years ago and she subsequently recovered from.
Her balance got very bad around this time and at present, she is actually not mobile at all at the moment. She has lost a huge amount of weight as one of her symptoms was vomiting all the time. She also has sarcoid in her bones.
She is being treated with infliximab which is being administered by IV every 4 weeks.
We are very worried about her at the moment, she is house bound and very down about this illness and the effect it is having on her body.
Can anyone share what treatment was used effectively on them? We are in Ireland and there does not seem to be much awareness of this awful disease here.
She is waiting for a bed in the national rehabilitation hospital at the moment where they are hoping to build up her strength with physio/occupational therapy.
Any advice would be greatly appreciated.

Thank you.

I was diagnosed with sarcoidosis in October 2013 after months of feeling very ill with chronic fatigue, weight loss, hot and cold sweats, undescribable pain in boned and body, re current bells palsy in my face, liver and kidney malfunctions you name it I had them all. Although I was initially diagnosed with systematic sarcoidosis I have since developed neuro sarcoid, pulmonary sarcoid, its also in my liver, kidney, eyes and has triggered off gluacoma leading to me having 2 eye surgeries, my blood pressure is constantly really high, endless twitching, body parts moving on their own, cramps and spasms the list is endless.

I've been treated with methotrexate and cyclophosphamide both chemo treatment and both has failed. I am now on infliximab and in my 4th month of being treated with it and don't feel any better. I am practically house bound now as in too much pain to walk. My body feels like a large piece of brick that I'm am trying to move, detached but accompanied with searing burning pain. This disease is the most awful thing anyone can imagine. I don't know whats ahead now, the past 2 and a half years have been living hell.

Hi thisandthat and welcome to Healthypages,

I can't claim to know anything about your condition or what you must be going through, but thought I would at least be the first to welcome you.

🙂

All Love and Reiki Hugs